The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Sunday, October 11, 2015

As I’ve documented in this blog, my life went to hell back in 2009. I almost lost everything, and that included, as a recent blog post by Carolyn Thomas addressed, my sense of self. Carolyn refers to this type of loss as a form of suffering “that is often dismissed by health care providers.” She quotes Dr. Kathy Charmaz:

““chronically ill persons…observe their former self-images crumbling away without the simultaneous development of equally valued new ones. … The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”

Carolyn and Kathy describe the impact of this at the various stages of being a patient. Take, for example, pre-diagnosis:

“Physicians can discredit our own definitions of self when we’re seeking help for early troubling symptoms (e.g., when we try to convince a dismissive doctor: ‘I know my body, and something is just not right!’) Dr. Charmaz warns that physicians sometimes treat undiagnosed persons ‘as neurotics whose symptoms are either nonexistent or psychosomatic in origin, leaving the patients feeling unsupported…’”

This matches my experience.

Carolyn and Kathy make a distinction:

“On one hand, you have those who are still living with the debilitating daily reality of chronic illness. These are not the same at all as those who at one time in the past may have had an episode of serious illness — but then got better. ‘For (the latter group), such periods of serious illness became the foundation for re-evaluation and change of self. These individuals (speak) of earlier crises as periods of time when they were free from the ordinary bonds of routine existence. That freedom heightened their consciousness of who they were and who they wished to become. For these people, illness became a tool of self-discovery and a fundamental source of later self-development.’”

My illness provided time during which I re-evaluated who I was and wanted to be. Emerging from that time was a commitment to telling the story of my unnecessary healthcare nightmare and to find other ways via which I could help to bring about badly needed healthcare system change.

The amazing Medicine X conference — with its roots in Medicine 2.0’11 — strengthened that commitment, as I was designated a ePatient scholar by the conference for 3 years. My sense of self was newly formed. I had a new mission in life.

But a large part of my working to achieve that mission overlapped with my previous life as I began to focus on talking and writing about ways experience design(ers) can maximize their impact on the healthcare system. Indeed, I’ve spoken about such things at experience design events (e.g., EPIC 2012 & Healthcare Experience Design 2013), and I’ve written about such things in blog posts and magazine articles (e.g., for UX magazine & interactions magazine).

And I began to work again in my field, with, particularly via my teaching at the Academy of Art University and General Assembly, a focus on experience design in any industry, not just healthcare. So that new sense of self began to be pushed aside by a sense of self much like that which I had before I became ill.

I’m still involved with Medicine X. I was there at the most recent conference in Stanford last month, where I helped moderate a day-long session on applying neuroscience concepts to healthcare design. I program a series of events year round under the title of the San Francisco Bay Area chapter of Medicine X. I’m even planning a Medicine X pop-up event in Austin for next month. But am I doing as much as I had hoped to do?

This week, I start teaching another 10-week UX design immersive course for General Assembly. I also find myself (with 3 others) confronted by the chore of reading and evaluating over 100 UX-related case studies which have been submitted for consideration for presentation at the CHI 2016 conference. Healthcare is not the (direct) focus of most of all this.
What sense of self will win out or emerge going forward?